Anticipating future crises: Lessons from cystic fibrosis patient experiences during the COVID-19 pandemic

Introduction: The care paths and lives of cystic fibrosis patients were profoundly altered during the health crisis in France. Patient experiences can be used to provide lessons on how to adapt to a crisis. Purpose of the study: The ExPaParM collaborative study analyzed the experiences of a varied sample of patients and identified changes in practices in Cystic Fibrosis Centers (CFC), with the aim of characterizing adaptations made and destabilizing events experienced during this crisis, using a systemic approach. Results: Adaptation practices aiming to minimize the impact of the crisis or maintain the recommended quality of care, as far as possible, have been identified. These adaptations concern the individual level (patient and family), local care, care management at CFCs, and hospital organization. When the crisis has negatively affected patients, resilience factors based on individual and family skills, a relationship of trust with professionals, and informal solidarity networks have enabled complex situations to be overcome. Conclusion: Strong points prior to the crisis proved decisive: the structuring of CFC teams, digital resources, therapeutic patient education, and a circuit for disseminating information related to cystic fibrosis. Reducing vulnerability to a future crisis also means securing essential medicines for the disease, organizing protected hospital circuits, and developing patient preparedness plans.